Advocacy
The Scoop from Capitol Hill – February 2025
House and Senate Republicans have been focused on passing the Administration’s priorities. The Senate approved a billion-dollar budget framework focusing on defense and border enforcement funding. On the other side of the Capitol, the House recently passed its own budget framework. This package is wider in scope and costs.
Read MoreHydrocephalus Association Medical Advisory Board And Scientific Advisory Board Issue Response to Cuts to NIH Indirect Cost Payments
The Hydrocephalus Association Medical Advisory Board and Scientific Advisory Board urge the Administration to rescind the directive for the National Institutes of Health (NIH) to cap indirect costs for research funding at 15%.
Read MoreHydrocephalus Community Advocates for Change on Capitol Hill
The Hydrocephalus Association brought over 50 key leaders from the hydrocephalus community to advocate for change by meeting with their congressional representatives on Capitol Hill.
Read MoreThe January Hydrocephalus Scoop on the Hill
The 119th Congress is in full swing. Republican leadership is zoned in on crafting a large legislative package that includes key priorities around tax, immigration, and budgetary issues. The package will likely go through a process called reconciliation, which allows certain budget-related bills to bypass the 60-vote filibuster in the Senate.
Read MoreAdvocates to Rally on Capitol Hill for Hydrocephalus Awareness and Research Funding
50 key leaders in the hydrocephalus community from 18 states will convene in Washington, D.C., for Hydrocephalus Capitol Hill Day.
Read MoreHydrocephalus Association Expresses Concern Over Executive Orders That Could Affect Hydrocephalus Research
The Trump Administration recently issued Executive Orders that could have long-term consequences for hydrocephalus research, potentially impacting the health of hydrocephalus patients, particularly children.
Read MoreLooking Back at Key Accomplishments in 2024
2024 was a year full of legislative accomplishments for the Hydrocephalus Association and the broader hydrocephalus community. Our successes could not have been achieved without the hard work of advocates from across the country. Partners in Congress were some of the strongest contributors for our mission as well.
Read MoreU.S. House Foreign Affairs Committee Holds Hearing on the Challenges Affecting Global Hydrocephalus Patients
The House Foreign Affairs Subcommittee’s November 20th hearing discussed global brain health challenges, focusing on hydrocephalus in developing countries. Experts, including Dr. Benjamin Warf of NeuroKids, highlighted the need for better care and training to support patients, particularly in low-resource regions. The hearing also addressed the lack of USAID programs for brain health and the importance of international aid for hydrocephalus treatment.
Read MoreThe Exclusive Hydrocephalus Scoop on the Hill | Key Updates for November 2024
Washington, D.C. is buzzing as Congress pushes key legislation and the Hydrocephalus Association partners with advocates to drive priorities forward. With government funding set to expire on December 20th, a short-term resolution is likely. The new presidential administration and Congress will bring major changes, especially in the first 100 days. Stay tuned!
Read MoreTraumatic Brain Injuries Delegated as Chronic Condition by Medicare
In a monumental step for Americans living with traumatic brain injury (TBI), the Centers for Medicare and Medicaid (CMS) recently added TBI as a qualifying condition for Medicare Advantage Chronic Special Needs Plans (C-SNP).
Read MoreWhat Hydrocephalus Patients Should Know for Medicare Open Enrollment
As Medicare beneficiaries navigate through the open enrollment period, it is crucial for them to understand the surplus of 2025 changes as they choose a new Medicare insurance plan. The Medicare Open Enrollment Period began on October 15 and will close on December 7th.
Read MoreGet the Exclusive Hydrocephalus Scoop on Capitol Hill for October 2024
As healthcare advocates race to secure passage of critical bills before the end of the 118th Congress, the Hydrocephalus Association (HA) is joining forces on Capitol Hill, advocating for vital legislation to support Medicare coverage for breakthrough devices, strengthen the medical workforce, ensure fair billing practices, fund brain research, and raise hydrocephalus awareness.
Read MoreAdvocates Participate in Rally for Medical Research To Educate Lawmakers on Hydrocephalus Research
The Hydrocephalus Association recently brought advocates to Washington, D.C. for the Rally for Medical Research Advocacy Day on Capitol Hill. This event united a diverse group of stakeholders, including doctors, scientists, patients, and caregivers, to advocate for strong funding for the National Institutes of Health (NIH). Grassroots advocates—patients and caregivers—from more than five states participated to represent the hydrocephalus community.
Read MoreGet the Exclusive Hydrocephalus Scoop on Capitol Hill for September 2024
Stay informed with the latest updates on hydrocephalus advocacy from Capitol Hill as we highlight key legislative efforts and community engagement for September 2024.
Read MoreGet the Hydrocephalus Scoop on Capitol Hill for August 2024
Things in Washington, DC are both quiet and chaotic at the same time. Apparently, it’s a thing with the political world. Here’s the scoop on what’s happening on hydrocephalus issues.
Read MoreGet the Hydrocephalus Scoop on Capitol Hill for July 2024
Things in Washington, DC are both quiet and chaotic at the same time. Apparently, it’s a thing with the political world. Here’s the scoop on what’s happening on hydrocephalus issues.
Read MoreGet the Hydrocephalus Scoop on Capitol Hill for June 2024
Things in Washington, DC are both quiet and chaotic at the same time. Apparently, it’s a thing with the political world. Here’s the scoop on what’s happening on hydrocephalus issues.
Read MoreNational Partnership for Pediatric to Adult Care Transition (NPPACT) Hosts First Congressional Event
The Hydrocephalus Association, alongside several other organizations, hosted a Capitol Hill Briefing to address the significant challenges young adults with pediatric-onset conditions face when transitioning to the adult healthcare system, highlighting the urgent need for improved continuity of care and systemic support.
Read MorePatient Engagement: A Key Healthcare Priority
HA staff recently attended the National Health Council’s (NHC) Science of Patient Engagement Symposium. The event, hosted in Washington, D.C., brought together an array of patients and patient organizations to speak on the importance of patient-centered programs and policies within the American healthcare system.
Read MoreGet the Hydrocephalus Scoop on Capitol Hill | May 2024
Things in Washington, DC are both quiet and chaotic at the same time. Apparently, it’s a thing with the political world. Here’s the scoop on what’s happening on hydrocephalus issues.
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